FEEDING AND THE CHILD WITH AUTISM SPECTRUM DISORDER (ASD)

Transcription

1 FEEDING AND THE CHILD WITH AUTISM SPECTRUM DISORDER (ASD) The University of Queensland Brisbane, Australia Royal Children s Hospital Brisbane, Australia

2 OVERVIEW 1. Diagnosis and prevalence of ASD 2. Features of feeding difficulty in ASD Sensory difficulties Motor difficulties Communication disorder Learning differences Behavioural difficulties 3. Survey of Practice 4. Management Assessment GI disorders and specialty diets Therapy tips 5. Healthy Eating Learning Program (HELP) study

3 DIAGNOSIS OF ASD Need for thorough investigation by paediatrician and preferably other professionals input before diagnosis is made Diagnosis made based on labelling and analysis of behaviours Proposed revisions to DSM-IV currently developing DSM-V due for release May 2013

4 PREVALENCE OF ASD IN THE UNITED STATES Between 1 in 80 and 1 in 240 with an average of 1 in 110 children in the United States have an ASD. Reported to occur in all racial, ethnic, and socioeconomic groups, yet are on average 4 to 5 times more likely to occur in boys than in girls. If 4 million children are born every year 36,500 children will eventually be diagnosed with an ASD 730,000 individuals between the ages of 0 to 21 have an ASD.

5 PREVALENCE OF ASD IN AUSTRALIA Australian Advisory Board on ASD (Wray and Williams, 2007) 62.5 children per 10,000 with ASD (aged 6-12 years) 1 in 160 children has a diagnosis of ASD

6 WHAT IS A FEEDING DIFFICULTY? Picky eating Feeding Difficulty Transient Ongoing Reduced dietary variety Reduced dietary variety Still meet nutritional requirements from diet Ongoing food neophobia Behavioural difficulties at mealtimes Up to 50% of typically developing children will experience picky eating Occurs more frequently in children with a developmental disability Carruth and colleagues (1998) Mascola and colleagues (2010) Mascola and colleagues (2010) Fischer and Silverman (2007)

7 WHAT DOES HAVING A FEEDING DIFFICULTY MEAN? Lifelong eating habits are formed in early life Short-term problems Long-term problems Increased risk of adult disease Potential damage to parent-child relationship

8 COMMON FEATURES OF FEEDING DIFFICULTY IN CHILDREN WITH ASD Feeding disorders have been observed in children on the autism spectrum since the earliest diagnostic descriptions of the disorder by Kanner in 1943 Twachtman-Reilly, J., Amaral, S., & Zebrowski, P. (2008)

9 LITERATURE REVIEW DIETARY INTAKE Dietary preferences (n=26)

10 LITERATURE REVIEW MICRONUTRIENT INTAKE Micronutrient Too much? (n/26) Too little? (n/26) Fibre - 2 Vitamin A - 2 Vitamin B1-1 Vitamin B2-2 Vitamin B Vitamin C - 2 Vitamin D - 3 Vitamin E 1 3 Vitamin K - 2 Zinc - 2 Iron - 5 Calcium - 5 Sodium 1 -

11 LITERATURE REVIEW GROWTH Growth (n=26) 3 3 Does increased intake of starches, and decreased intake of vegetables have an impact on overweight/obesity in this group? Do we see all of the overweight/ obese children in this group, or are we more inclined to see underweight, as more immediate concern?

12 LITERATURE REVIEW MEALTIME BEHAVIOURS Refusal (n=21)

13 LITERATURE REVIEW MEALTIME BEHAVIOURS Ritualistic Behaviors (n=21)

14 LITERATURE REVIEW MEALTIME BEHAVIOURS Mealtime Skills (n=21)

15 LITERATURE REVIEW MEALTIME BEHAVIOURS Maladaptive Behaviours (n=21)

16 WHAT ARE THE MOST COMMON FEATURES FROM THE LITERATURE? Restricted dietary variety Food neophobia (persisting) Food refusal based on texture Limited fruit/veg intake Preference for starches High degree of parental stress regarding balanced intake?

17 WHAT ELSE MIGHT IMPACT? Sensory Processing Disorders Motor disorder Feeding Difficulties Communication Difficulties Learning Differences Behaviour Difficulties

18 SENSORY MODULATION DIFFICULTIES Sensory modulation: allows an individual to appropriately filter sensory information Dysfunction Hyperresponsivity Hyporesponsivity Fluctuating responsivity Lane, Miller & Handt, 2000

19 SENSORY MODULATION DIFFICULTIES Type of system Auditory Visual Gustatory Olfactory Tactile Vestibular Proprioceptive Hyperresponsive Overly sensitive to sound in the mealtime environment Possible symptoms: Cover ears, anxious, aggression, cry, yell, withdrawn, distracted Overly sensitive to light and movement in the environment Possible symptoms: Shield eyes, squint, avert gaze, withdrawn,anxious, distracted resulting in a reduction in food intake Overly sensitive to a variety of tastes Possible symptoms: Picky eater, prefer bland flavours, food refusal, gagging Overly sensitive to smells that others do not notice Possible symptoms: Picky eater, distressed, anxious, withdrawn Overly sensitive to tactile input to the skin and/or oral areas Possible symptoms: Dislike messiness around mouth, prefer neutral temperatures, food refusal Overly sensitive to movement or change in head position Possible symptoms: Poor coordination for utensil use, fearful in unsupported seating Over-alert body awareness and grading force Possible symptoms: Overstimulated during mealtimes; don t cope with lack of structure Twachtman-Reilly, J., Amaral, S., & Zebrowski, P. (2008)

20 SENSORY MODULATION DIFFICULTIES Type of system Auditory Visual Gustatory Olfactory Tactile Vestibular Proprioceptive Hyporesponsive Unaware of sounds in the mealtime environment Possible symptoms: Daydreaming, spacey, lengthy meal times Unaware of relevant or changing visual input in the environment. Possible symptoms: Over focused on irrelevant visual features of the food or plate, inattentive to complete meal Poor taste discrimination Possible symptoms: Crave strong flavours (sour, spicy, etc.),lick or taste inedible objects, PICA Unaware of even strong environmental odours Possible symptoms: Disinterested in eating without the enhancement of smell Unaware of touch and differences in food textures Possible symptoms: Unaware of messiness around mouth, over-stuffing or pocketing food, mouthing inedibles. Seeks high levels of movement input Possible symptoms: Poor posture, high activity level, fidgety Poor body awareness and grading force Possible symptoms: Messiness, poor gradation of jaw and hand to mouth movements

21 MOTOR DIFFICULTIES Some researchers suggest no difference between ASD and typically developing children in motor development Provost, Lopez and Heimerl (2007) assessed motor delay in 3 groups of children: ASD, DD and developmental concern but no motor delay ASD and DD presented with similar patterns of delay

22 MOTOR DIFFICULTIES Fournier and colleagues (2010) reviewed 83 studies and found children with ASD to have substantial motor coordination deficits across a wide range of behaviours Toomey (2010) suggested that children with ASD have: Decreased manual imitation (particularly sequences) Decreased oral praxis Decreased postural stability Unusual posturing (e.g. toe walking) Increased repetitive movements

23 COMMUNICATION DISORDER Deficits in language comprehension Difficulty recognising communicative intent of language Poor joint attention and eye contact Delayed speech development Very literal in interpretation of language Difficulties with word-object associations because of issues with joint attention Often have poor social language skills Can lead to unacceptable social behaviour, food refusal in the challenging environment

24 LEARNING DIFFERENCES Children with ASD have a different style of learning Pay attention to microscopic details Poor ability to generalise skills to new situations Often stuck or obsessive ideas (once something is learnt it is not shiftable) E.g. I don t eat fruit Be careful of your language Literal interpretation Positive language

25 BEHAVIOURAL DIFFICULTIES Behaviour problems are usually a result of sensory problems, communication breakdown and/or medical problems Ritualistic and repetitive behaviours often predominate Lack of predictability can affect mealtimes Children with ASD tend to eat based on external stimuli e.g. clock rather than internal stimuli don t eat to satisfy hunger Fear and anxiety contribute to mealtime difficulties in children with and without ASD

26 SURVEY OF PRACTICE n=150 (96 completed full survey) Facility Location Other 6% Hospital 15% Rural/remote area 15% Private Practitioner 24% Community Health Centre 16% Regional area 28% Metropolitan area 57% Education System 10% Early Childhood 9% Disability Services 16% ASD Specific Centre 4%

27 WHAT DO YOU MEAN, RURAL?

28 REASONS FOR REFERRAL Picky eating Restricted diet Eating the Unable to same food at tolerate every meal small changes to the appearance of foods Being overweight Being underweight Parents having difficulty managing maladaptive mealtime behaviours Unusual or ritualistic eating behaviours Gagging or choking on foods Only eating one food texture Not eating fruit or vegetables Pica

29 DIET AND COMPLEMENTARY MEDICINE Gluten-free never 9% Gluten-free in the past 27% Gluten-free now 64% Casein-free never 35% Casein-free in the past 28% Casein-free now 37% Low food chemical and additive diet in the past 33% Low food chemical and additive diet never 9% Low food chemical and additive diet now 58%

30 DIET AND COMPLEMENTARY MEDICINE Acupuncture now 5% Acupuncture in the past 28% Chiropractor never 39% Chiropractor now 23% Acupuncture never 67% Chiropractor in the past 38%

31 INTERVENTION Frequency 1. Fortnightly 2. Weekly 3. Monthly Service delivery options 1. Individual 2. Parent-as-therapist 3. Group Most children between 2 & 5 years Most children were seen for at least a year

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33 KNOWLEDGE AND PERCEIVED THERAPY SUCCESS Extensive 3% Limited 4% Never 1% Comprehens ive 27% Below average 16% Generally 10% Rarely 5% Often 31% Sometimes 53% Average 50%

34 MANAGEMENT OF FEEDING DIFFICULTY Medical examination Rule out any medical reasons contributing to food refusal e.g. GOR Dietetics consultation Determine if the child is growing appropriately and receiving adequate nutrition children with ASD can present as overweight but malnourished

35 MANAGEMENT OF FEEDING DIFFICULTY Speech Pathology Assessment Examine oral motor skills/communication skills Occupational Therapy Assessment Examine sensory processing and motor skills Psychology

36 GI DISORDERS IN CHILDREN WITH ASD Widespread speculation regarding the prevalence of GI issues in children with ASD Black, Kaye & Jick (2002) examined a large sample and found children with ASD no more likely to present with history of GI problems before diagnosis Horvath, Papadimitriou, Rabsztyn and Tilden (1999) reported a much higher incidence of GI issues in children with ASD. Main issue is the difficulty children with ASD have in communicating gastrointestinal discomfort

37 ALTERNATIVE NUTRITIONAL MANAGEMENT Reasoning: Diet causing/exacerbating adverse behaviours Gluten-free casein-free (GFCF) diet Awareness of these is important as to allow parents to make the best-informed choice they can for their child be wary that you may need to build up a child s variety of intake before you cut foods out

38 YOUR ASSESSMENT SHOULD INCLUDE: Full Case History 3 day diet record Food Frequency Questionnaire Oral exam (if possible) Observation of eating favourite foods Observation of reaction to less favoured foods Idea of communication skills/level of visual support required in management

39 Does your child: Never Rarely Somet imes Cry or scream during mealtimes Turn his/her face or body away from food Expel food that he/she has eaten Act disruptively during mealtimes Close their mouth tightly when food is presented Remain seated at the table until meal is finished Act aggressively during mealtimes Display self-injurious behaviour during mealtimes Display flexibility about mealtime routines Refuse to eat foods that require a lot of chewing Demonstrate willingness to try new foods Dislike certain foods and won t eat them Prefer the same foods at each meal Prefer crunchy foods Accept or prefer a variety of foods Prefer to have food served in a particular way Prefer only sweet foods Prefer food prepared in a particular way Often Always

40 ACTIVITY Centipede Dog Food Vomit Toothpaste Strawberry Jam Chocolate Pudding Peach Berry Blue Mouldy Cheese Booger Baby Wipes Rotten Egg Caramel Corn Juicy Pear Coconut Buttered Popcorn CONSIDER CONTRIBUTION OF SENSORY PROCESSING!

41 TOP TEN THERAPY TIPS (1) Be predictable Use visuals to support your sessions Pictures to inform of routine Pictures to count number of foods Schedule a break for sensory work/calming Prepare the child with auditory information Use transition songs

42 TOP TEN THERAPY TIPS Consider contributions of sensory sensitivities (2) Consult your occupational therapist for a sensory assessment Provide a sensory warm-up prior to treatment to ensure child is at an optimal sensory functioning level most ASD children need calming activities Use your OT assessment to guide your choices in terms of (children with ASD often hyper but sometimes hypo): Auditory Processing Visual Processing Taste Processing Olfactory Processing Tactile Processing

43 TOP TEN THERAPY TIPS (3) Ensure child is in a posturally stable position Ideal position is: Feet flat on floor Hips flexed at 90º Table at elbow height Children with additional sensory requirements may need: Move n sit cushion hyporesponsive vestibular system Weighted vest or deep pressure massage poor proprioceptive skills

44 TOP TEN THERAPY TIPS (4) Always work with hierarchies in mind First few sessions will likely be about establishing and understanding routine (initially you might need to keep tasks short) Work with food chaining to select food goals Child MUST be processing sensory input of the task or they will not be learning the action.

45 FOOD CHAINING Useful for selecting food goals Based on child s natural preferences Offer foods which are minimally different from a sensory perspective E.g. McDonalds hot chips Hungry Jack s hot chips oven baked frozen french fries oven baked frozen thick chips oven baked fresh potato chips oven baked half potato baked potato

46 HIERARCHY OF SENSORY EXPOSURE Tolerate in the same room Tolerate on your plate (look) Smell Touch with an object/preferred food Touch with fingers Pick up Put on body from back of hand up to face Put on lips (kiss) Put on teeth Put on tongue (snake-lick big lick) Hold in teeth Bite Bite through and spit Bite through and chew and swallow

47 TOP TEN THERAPY TIPS (5) Consider contributions of motor skills deficits Once you have built a relationship with the child, and you understand their motor capacity, you may need to assist with: Initiation Sequencing of the task Child MUST be processing sensory input of the task or they will not be learning the action. Toomey (2002/2010)

48 TOP TEN THERAPY TIPS (6) Be totally in tune with the child s sensitivities and stress cues before you begin challenging them Some stress cues might include: Finger splaying Running away or becoming aggressive Changes in breathing pattern Shrugging of shoulders Grimaces Shutting eyes/turning away

49 TOP TEN THERAPY TIPS (7) Break food jags (Toomey, 2010) Start to address this issue after 6-8 weeks of therapy you need to understand how much change the child can cope with Make small but noticeable changes with warning to familiar foods Shape Colour Taste Texture Try combining a familiar food with a new food e.g. Dips Child should ideally not be eating the same food at the same meal every day

50 TOP TEN THERAPY TIPS (8) Move Slowly! Make sure parents are aware from the outset that these children can be very slow to change If you try to move too fast, you will likely jeopardise your progress!

51 TOP TEN THERAPY TIPS (9) Provide parent education and support simultaneously Educate parents about sensory processing, oral motor skills, mealtime behaviours, appropriate diet and WHY their child is behaving the way they are i.e. Not just being naughty! Encourage parents to make food and interaction with food a part of daily routine at home Encourage family to change at least one small piece of the environment to consistently make the sensory system work to be adaptable

52 TOP TEN THERAPY TIPS (10) Always consider generalisation and be working on this Make small but noticeable changes to tasks Set goals WITH the family if they are not functional and meaningful to the family, they will not be achieved

53 HEALTHY EATING LEARNING PROGRAM (HELP) FOR FUSSY EATERS Randomised controlled trial (RCT) Comparing clinical benefits and cost effectiveness of different feeding intervention programs for children 1-6 years old with feeding difficulties and restricted dietary intake Examining specific populations: children with autism spectrum disorder; children born prematurely; children with a history of cancer, gastro-intestinal disease; or cardio-respiratory disease; and children with no major medical history, but a restricted diet. Programs to be evaluated are multidisciplinary programs already used widely

54 BACKGROUND It is universally accepted that a wide range of dietary intake is essential for optimal growth and development It is widely reported that many children aren t meeting their nutritional requirements Parents report feeding difficulties as one of their biggest concerns Parents want guidance on how to get their children to eat a wide range of foods There is currently wide variation in practice related to managing children with feeding difficulties No published studies are available that compare outcomes from different approaches

55 KEY INDICATORS OF FEEDING DIFFICULTIES Limited range of textures Often reliance on easy to eat junk foods Limited range of foods < 30 foods <10 fruit/ veg, <10 proteins, <10 grains/starches Prolonged mealtime duration >30 mins at mealtimes, >2hrs a day spent trying to feed child Battles/ problematic behaviour at mealtimes Family stress related to the child s eating patterns

56 HELP STUDY Eligible children are stratified into groups and undergo baseline assessment Parents elect to participate in weekly or intensive therapy Intensive (over 1 week) RANDOMISATION Weekly (over 10 weeks) Arm One Arm Two Arm One Post treatment assessment 3 month follow up assessment Arm Two

57 STAFF Multidisciplinary team including Speech pathology Occupational therapy Psychology Dietetics Gastroenterology

58 QUESTIONS?